Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals. Thank you Michelle Carpenter for this great photo.

Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals.
Thank you Michelle Carpenter for this great photo.

Expectations. Expectations are the root of all unhappiness. If you expect something and you don’t get it, you are disappointed. You are sad. You are let down. You are angry. You are bitter. You are many things and none of them good.

If you call a friend and leave a message; you expect a call back. If you tell someone you love them; you expect them to reciprocate. If you marry someone; you expect to grow old with them.

What if you expect more of yourself? What if you expect to be a better person, have more patience, be more understanding, be a better parent, friend, neighbor, employee, human? And then you are constantly failing to live up to your own expectations. How do you feel?

When Brad went to Iowa for the World Finals for Odyssey of the Mind last week, I think he had an expectation to win. As a competitor, that is how you think. They didn’t win first place, but honestly, I couldn’t be prouder. It was a great experience and I enjoyed the time we got to spend together. He is an awesome young man and he showed me a side of him I don’t get to see in the rush of home life. The week we spent together, walking all over the Iowa State campus is a time I will treasure for the rest of my life. I think in his own 10 year old way it was a very special time for him too.

Brad and I getting ready to fly to Iowa.  Thank you Victoria Daley for the photo.

Brad and I getting ready to fly to Iowa.
Thank you Victoria Daley for the photo.

Before we left for Iowa, I spoke with Jim about not attending Frances’ softball tournament that would be taking place while we were away. The tournament was out of town so she and our nephew would be going and Jim would stay home and take care of the dog and house and stick to his normal daily routine. He was fine with it. He said he would prefer to stay home. It was all good. But a few days later, while I was sitting in a dorm room half a country away, I was informed when it was time to pack up and leave, Jim started getting ready too. He wanted to go. It was uncomfortable for everyone involved. I felt guilty. What should I have done different? How could I expect Jim to remember he wasn’t going? Because he said he didn’t want to? I was heartbroken thinking of him feeling “stuck” or “left behind”. The last time I left him home for a night he thanked me for trusting him home alone. Maybe I was expecting the same reaction. I must try to be one step ahead, but with this cunning disease, it seems an impossible task. He didn’t remember our conversation. He didn’t remember he wanted to stay home just a few days earlier.

Remember my Morning Glory story? Guess what? Jim decided while I was at work this week to trim our hedge. Guess what? I don’t have a Morning Glory vine to bloom this year. On a positive note, there was no door slamming, no yelling and no tantrums on my end. I didn’t stop myself from asking him why he trimmed the hedge where the vine was growing when there is a whole backyard full of hedge that could be trimmed instead. (He literally only did the place where the vine grows) It is a baby step for me. I know he felt bad once I mentioned it, so I suppose my next step is to stay silent. I am not sure that will ever be possible for me. It is not in my DNA. I must come up with another way for me to deal with his great efforts that fall short in my expectations.

Expectations. I expected him to know not to cut the vine. I expected him to remember our conversation. I expect him to know to close up the bag of crackers before putting them in the cabinet. I expect him to be able to see there is standing water in the flower pot and to realize it doesn’t need more water.

These past few weeks I had jury duty. I spoke to a friend about being there all day with no phone. I asked if she would be willing to answer the usual questions Jim has for me throughout the day. She said she would be more than happy to. But she also said, “ I know you feel an obligation to do jury duty, but you have circumstances that make it ok to get out of it.”

And there you have it. As her words reverberated through my mind, I started to understand that I have been grasping at ways to keep my life ordinary.I have been struggling to keep our family “normal”. I don’t want to be a family that has extraordinary circumstances. The ironic part of my epiphany is I have never wanted to be ordinary and thrived on being a little different and thinking outside of the box. But I am not in control of our singular life, whereas before I could at least feel like I was.

Our lives are changing but I have been unable to accept these changes. I have expectations that I haven’t been able to release. Expectations of my life still being my life. My marriage still being my marriage. My husband still being my husband. Our family still being ordinary. But nothing in my life is as it once was. And will never be again.

I am trying to free myself from expectations. Those chains of desires, beliefs and whimsical daydreams keep me in a constant state of imprisonment. Imprisoned in my own mind. It may be Jim that has a disease that affects his brain, but it also has a lasting and maddening effect on mine as well.

When I release these expectations, what will I have? Who will I be? Will that mean I have accepted our fate….Jim’s fate? Does that mean I will have given up?

Should I not expect him to be able to do simple tasks around the house? And if I don’t, what will he do all day? Should I stop expecting to be able to have a home that doesn’t have rotting wood, dead flowers, dirty floors or things scattered in no particular place?

Should I not expect to be able to relax? To see friends? To go to a show or on vacation or want more out of life? What about Jim’s life? Everything is mingled and complicated and when I think too much I become so emotional and overwhelmed my mind practically shuts down and I am worthless. Then I am disappointed because I expect myself to be better and to do better. I have to be a good Mom. A good worker. A good wife. A good friend. A good housekeeper. A good cook. A good organizer. A good planner. A good person. And I am not. I am impatient and I am not always kind and I get frustrated and I sometimes want more. Sometimes I say the wrong thing or I forget something I should have remembered.

My life is such a complicated conundrum that continues day after day and year after year. I am desperately searching for a game plan to know the right way to navigate this nightmare, but there isn’t one.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)

Ups and Downs

Supporting Brad at the state competition. April 2014.

Supporting Brad at the state competition. April 2014.

It is time! Brad’s Odyssey of the Mind team is headed to Ames, Iowa to compete in the World competition. I am so, so lucky I was able to take off  work and go with him.. I always seem to spend more time with Frances for some reason or another and it makes me so happy to get to share this grand experience with him.

Of course a huge dilemma was leaving Frances and Jim for 6 days with no transportation. As luck would have it, my awesome nephew just finished his first year of college and was not only available, but willing to come stay with them and help. Again, our lives are blessed by those we have in it.

Another huge stressor is getting everything ready. I am in the process of fixing some sauce to have ready in the refrigerator. I will put dinner in the crock pot before we head to the airport. I have cleaned, shopped, asked friends to be on call and organized the schedule for the rest of the week. Naturally Frances has a softball tournament out of town while we are away and thankfully (again) some parents have stepped up to offer help however need be.

Tonight while I was trying to pack, I noticed some clothes that were in the dirty laundry earlier in the day now hung up in our room. I did 3 loads today so I was familiar with what still needed to be washed. There was a not washed linen skirt, all jacked up on a hangar dangling in the closet door space. So, I start investigating, which I have come to realize, albeit too late most of the time, that I should just stop doing. Yes, dirty clothes were put away with the clean clothes and wet towels were thrown on top of some of the clothes left in a basket and then another basket was put on top of a basket of clothes as well. Everything dealing with our laundry was completely awry.

Then to top off the day, I was putting groceries away and one of the shelves on the door of our fridge literally broke when I put something in it. I quickly emptied the contents while putting the rest of the food away and fixed dinner. It wasn’t until after dinner I opened the door and saw the empty shelf back in the fridge, waiting for someone else to put a bottle in it to only fall on the floor. And yes, Jim was standing right there when it broke in the first place. He had no recollection.

It has been that kind of day. My bicycle tires were flat and I couldn’t get the air pump to work to put air in them. We had windows open with the air conditioning on. A block of cheese was put away with the wrapper ripped apart so that the cheese was now a much darker orange and hard as nails. The dog was left alone and grabbed a brand new bag of bagels off the counter and ripped them open. It was just one thing after another. The relatively new can opener no longer works. The flowers that were supposed to be watered were drooping bone dry. I was ready to scream!

But in the quiet of the night, I sit alone, and feel calm. I feel like it is all going to be ok. I feel cared for and supported. I realize all of the little things that go wrong make room for the big things to go right. All it took was a quick phone call from a friend wanting to touch base before we left tomorrow.

I am telling you, a quick note, phone call, lunch, drive by “hello”, whatever, makes a huge difference to someone. You may think they are living a perfect life. You may know the struggles they endure. Either way, we ALL need to know others care. We all need to feel like our worst days are better than someone else’s.

Some of you might be wondering why my fabulous parents, who always come to help, aren’t coming to help this time. Well, good question. They are driving to Iowa and coming to cheer Brad and his team on. How lucky am I? I have a nephew willing to help. Parents willing to help. Friends helping. What do I have to complain about? Nothing. Now if I can just get a new fridge shelf, working can opener, fix my tires and figure out a new system for the laundry, I would be the happiest girl in the world.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized and have Comments (5)

Change and Enlightenment

life changing quotes

Another first. Another heartbreaking moment I had to take in and keep in until I was alone. I must say that a talent which has always eluded me is becoming second nature….controlling my emotions and my ability to mask my emotions. I am not sure if this is a good thing, but it is a change and I will use it for the betterment of Jim. It is imperative that I not let him see each and every time I hurt or that I feel lonely or angry or frustrated. In my past, I have always had a bit of pride in the fact I am an open book. In a world full of games and hypocrites, I wanted to stand out as a person that you knew was telling it like it is and that you knew, really knew as a friend. Whether you liked me or not, there were no surprises.

Who is the Karen that hides her feelings and emotions? Who is the Karen that denies the pain and the desires?

I wore a shirt to work that had ties on the sleeves, right at the elbow. I couldn’t tie them so I asked Jim to. He couldn’t either. It wasn’t that he had forgotten how to tie a bow, he just couldn’t get his strong hands to be nimble enough to tie a bow.

I told him not to worry about it, no big deal. I needed to get out the door anyway. So I walked out with tan strings hanging down my arms and tears stinging my eyes. And then I sat in my vehicle and felt the sadness and grief wash over my body. I could feel the weight of realization crushing me. The immense sorrow filled me completely until I realized I needed to work and I turned on the radio, put the van in drive and began my day.

This is a tough, tough situation. Tough for me. Tough for Jim. Tough for the kids…..

I must focus on whatever is immediately at hand. I no longer plan past the day I am living in. I only deal with the immediate hours coming up . It is a coping mechanism that is unusual for me. I still catch myself trying to worry about something days away and I am somehow forced to re-focus on my current state of affairs.

I sometimes wonder what people think of Jim when they first meet him. Do they just think he is a little quirky? Do they think he is aloof and doesn’t care? I want to scream: “HE HAS ALZHEIMER’S AND WOULD NORMALLY NOT BE LIKE THIS!!!” What would a stranger think if he watched a grown man not be able to tie a simple bow? What does that parent at the ball field think when Jim makes a comment that really just doesn’t make much sense? I need a film of Jim 10 years ago to walk around showing off what a magnificent human being he was. He is. Just in a different way.

As upset as I get, I know we are blessed with so much. Inevitably something comes up that reminds me he is fading away from me, from us, which makes it hard to find those blessings and be grateful. But, then, life will happen that reminds me.

A recent reminder came in the form of timing. Timing is always everything.

This past weekend we had MANY things going on. I had to prioritize and plan. Everything about our weekend was scheduled down to a “T”. First, we would drive 4 hours on Friday afternoon to Brad’s Odyssey of the Mind competition, which was scheduled to take place early Saturday morning. Immediately after he was done, we would load back up and head to my hometown in Eastern NC for a 5 hour drive. We would make it just in time for my father’s induction in the local sports hall of fame. Then, Sunday morning, we would again be up bright and early to head the four hours back home, with stops along the way for softball and baseball games. Everything was timed perfectly and literally along the route we would be taking to get home anyway. It was a schedule that had been meticulously honed down and worked out with a lot of stress and decision making.

Everything was going as planned until Saturday morning when we arrived for the Odyssey of the Mind competition. The prop truck, which held the backdrop, costumes and set, was lost and would not be there in time. The team was re-scheduled for early afternoon. This one driver getting lost was putting a huge kink in everything that followed for our family  the rest of the weekend. All of the plans that I had meticulously worked out were immediately vaporized by a complete stranger.

At first I was mad. I was angry that I would now have to leave Brad behind or miss my Dad’s special night. I would miss his performance. I had been so grateful the two major events planned on the same day 5 hours apart were going to be doable so I didn’t have to choose between my Dad and my son and now it was looking like that wasn’t going to be the case after all. So I chewed on the new situation for a bit. Then it all became clear. I am not in control. I was trying to control all of the events and driving and circumstances. But I can’t control everything. The sooner I learn this lesson, the sooner I will be able to accept our situation. And that will be the sooner I can learn to relax and let things go.

So, I took a step back, realized this was happening whether I liked it or not and moved on. I was able to let Brad stay without us, be there for my Dad and get Frances to softball. Brad ended up missing his ball games, but we were all ok with that. Life goes on. There will be more games next weekend.

The one really sad part for me was missing the very exciting moment when the winners were announced for Odyssey of the Mind. I am proud to share that I missed hearing my son’s team called for first place. They will be traveling to Iowa the end of May to represent Virginia in the world competition, competing against 860 other teams from around the globe.

Now a whole new set of priorities, planning, scheduling, fundraising and stressing begins….

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)